Day 1 ~ Living

Inflammatory Bowel Disease - It's Not Your Fault

Maybe you were on the gurney in the recovery room after a colonoscopy, still reeling from the medication and desperately trying to keep your eyelids open.

Or maybe you had the fortune (or misfortune, depending on how you look at it) of being fully conscious in the doctor's office with a physician who told you what disease you had and promptly stuffed your hand full of literature and prescription sheets before sending you on your way. Perhaps you were home when the phone rang and the nurse practitioner read off the test results.

Or, like me, you were told as your body wallowed in post-operative pain.

Whatever way you were told of your diagnosis of CD or UC, the information that followed is least likely to have been totally grasped. Maybe you recall words like "chronic," "incurable," "surgery," or "steroids" but didn't understand anything beyond that. Most likely, you weren't carrying a notebook at the time and even if you were, you might not have heard everything you needed to know.

What you may have been able to grasp is that you were in shock. It is totally normal to feel this way, even if you were expecting to be diagnosed with IBD. Being told that you have something incurable or only curable with the surgical removal of the colon can feel like a slap in the face, something so eye-opening yet disconcerting.

Some people are stunned and profoundly saddened by the announcement of a diagnosis of IBD, even if they were expecting it. Sunni's first symptom came in the form of sores in her mouth. Months later, those were accompanied by blood in the stool, a sign that sent her scurrying to a gastroenterologist. Although she was betting that the diagnosis would be either IBD or cancer, she was initially very relieved to hear her doctor say "proctitis." However, when the same doctor later explained that what she really had was UC.

"At this point, I was numb," she said. "All of my earlier elation was gone."

For some, the diagnosis was a disappointing conclusion to a litany of baffling symptoms. Jenny had her first symptoms at the age of 20 when her temperature rose to 104 and was accompanied by strong abdominal pains. A surgeon performed an exploratory laparotomy and, finding an abscess, inserted a device to drain it. Although the drain closed, she continued to have problems, causing another doctor to remove a part of her ileum in the next year. Although the pain disappeared, she doesn't remember hearing the words "Crohn's disease" for almost two decades, during which time she continued to have intermittent diarrhea. Finally, at the age of 38, a colonoscopy and small bowel series were performed.

"As a result, I was diagnosed as having Crohn's disease and was informed of the medications to treat the symptoms. I declined the medications," she said. "I did not accept the diagnosis very well."

Others see it as a relief because a certain diagnosis has arrived and treatment has begun. Lynn is one of those. Year after year, she suffered with abdominal pain that doctors in her small town explained away as having a "hot appendix." Doctors excluded that diagnosis after a colonoscopy revealed changes thought to represent UC. When the medical therapy prescribed to treat that condition didn't work, another series of rigorous tests were prescribed and a final diagnosis of CD was made.

"I was relieved that there was something really wrong with me and that there was a way to treat it," she said.

Still more see the disease as a logical progression for them, sort of the other shoe dropping. Usually, these individuals have another family member or members who were diagnosed with either IBD in the past. Amy came from a family steeped in IBD. An uncle, two cousins and a great-aunt either had CD or UC. She developed symptoms shortly after giving birth, not an uncommon scenario. Then, she sought the advice of a colon/rectal surgeon who was unaware of her family history. A sigmoidoscopy was done and tissue samples were taken, confirming a diagnosis of UC.

"Only then did he ask about my family history, also the genders of who had Crohn's disease and who had ulcerative colitis," she said. "He said that my symptoms made more sense now that I had ulcerative colitis."

Whatever the case, the diagnosis is usually a shock to some degree or another. And that is perfectly natural. You probably weren't feeling well but whatever it was, you most likely didn't think it was incurable or curable only if a big chunk of a major organ is removed. Add to that the fact that you are facing decades of non-stop medication and most likely an occasional major surgery, and it is impossible not to be shocked.

So, for your first day, we are just going to deal with what you have right now: a diagnosis and a bit of shock. Just let that sink in. And as you are going through all of the accompanying feelings-perhaps a bit of denial and certainly a lot of wonder-just remember this next line: there is nothing you did to cause this nor did anyone else.